Tag: data collection

Bioethics News

Enhancing Sustainable Diets with Data Collection and Policy Analysis

The quality and quantity of the global food supply now and into the future are increasingly under threat. The food system contributes to one-third of greenhouse gas emissions and losses in biodiversity, to name just two consequences leading to environmental degradation. To mitigate environmental and health harms, governments around the world have instituted public policies to advance sustainability goals

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Enhancing Sustainable Diets with Data Collection and Policy Analysis

Feat. our Shauna Downs and Haley Swartz: The availability and analysis of data on policy design and implementation plays an important role in identifying the evidence base to determine which policies are successful in the pursuit of the desired outcomes in sustainability goals, particularly in low- and middle-income countries.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Mental Privacy in the Age of Big Data

By Jessie Ginsberg
Jessie Ginsberg is a second year student in the Master of Arts in Bioethics program and a third year law student at Emory University. 

A father stood at the door of his local Minneapolis Target, fuming, and demanding to speak to the store manager. Holding coupons for maternity clothes and nursing furniture in front of the manager, the father exclaimed, “My daughter got this in the mail! She’s still in high school, and you’re sending her coupons for baby clothes and cribs? Are you trying to encourage her to get pregnant?”
Target was not trying to get her pregnant. Unbeknownst to the father, his daughter was due in August.  
In his February 16, 2012 New York Times article entitled, “How Companies Learn Your Secrets,” Charles Duhigg reported on this Minneapolis father and daughter and how companies like Target use marketing analytics teams to develop algorithms to anticipate consumers’ current and future needs. Accumulating data from prior purchases, coupon use, surveys submitted, emails from Target that were opened, and demographics, a team of analysts render each consumer’s decision patterns into neatly packaged data sets tailored to predict their future buying choices. 

Flash forward to 2017, a time where online stores like Amazon dominate the market and cell phones are reservoirs of personal information, storing intimate details ranging from your location to your desired body weight to your mood. Furthermore, data analysis algorithms are more sophisticated than ever before, gobbling up volumes of information to generate highly specific and precise profiles of current and potential consumers.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Introducing Common Rule Webinar Series Blog Squad Member Dawn Leusner

Among scientists in the field of education, there are many who believe that all educational research, regardless of purpose, should be exempt from IRB processes and procedures. While the government did not approve education as a new category of excused research under the new proposed Common Rule that is currently slated to take effect in January 2018, there remain many areas of consideration that might be affected, including confidentiality, authentication of online participants, consent and assent, and questions around what constitutes research when conducting data collection activities in school settings.

The post Introducing Common Rule Webinar Series Blog Squad Member Dawn Leusner appeared first on Ampersand.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

The Crisis of Our Era: Can we find a way to talk about it?

So much of the fate of our planet, the human race, and all of God’s creatures depends on humans having an objective, causal understanding of the pressing problems we face and then, on that basis, developing some reasonably effective practical means by which those threats can be ameliorated—it’s called, using human intelligence and being connected to reality, at least reality with a small “r”, as in empirical reality. Just think of the causes of threats such as climate change, transmittable diseases and drug resistant viruses, gun violence, drug abuse, hunger, unemployment, poverty, lack of healthcare coverage, and on and on. Without reasonably sound knowledge of the causes of these threat humans are rendered helpless and vulnerable. And even with sound knowledge, without a practical, yes political, means, in the form of sound public policy, of collective action, to ameliorate them, we are cannot take meaningful action, and are still rendered helpless and vulnerable. Currently, in the United States there is vast disagreement not only over how best to formulate policy solutions to some our most pressing problems, there is often no agreement over how to understand the problem or even whether or not a problem exists. Climate change and gun control are two prominent examples. 

The fact that climate change is real and greatly accelerated by human activity is a fact about which there is clear scientific evidence. Practically all scientific societies, science academies, and governmental and intergovernmental agencies, are in complete agreement, which means the evidence for this empirical claim being true is about as compelling as anything we know about the natural phenomena.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

The Crisis of Our Era: Can we find a way to talk about it?

So much of the fate of our planet, the human race, and all of God’s creatures depends on humans having an objective, causal understanding of the pressing problems we face and then, on that basis, developing some reasonably effective practical means by which those threats can be ameliorated—it’s called, using human intelligence and being connected to reality, at least reality with a small “r”, as in empirical reality. Just think of the causes of threats such as climate change, transmittable diseases and drug resistant viruses, gun violence, drug abuse, hunger, unemployment, poverty, lack of healthcare coverage, and on and on. Without reasonably sound knowledge of the causes of these threat humans are rendered helpless and vulnerable. And even with sound knowledge, without a practical, yes political, means, in the form of sound public policy, of collective action, to ameliorate them, we are cannot take meaningful action, and are still rendered helpless and vulnerable. Currently, in the United States there is vast disagreement not only over how best to formulate policy solutions to some our most pressing problems, there is often no agreement over how to understand the problem or even whether or not a problem exists. Climate change and gun control are two prominent examples. 

The fact that climate change is real and greatly accelerated by human activity is a fact about which there is clear scientific evidence. Practically all scientific societies, science academies, and governmental and intergovernmental agencies, are in complete agreement, which means the evidence for this empirical claim being true is about as compelling as anything we know about the natural phenomena.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Access to Physicians’ Prescription Habits

Jean-Christophe Bélisle-Pipon calls attention to issues of accessibility and transparency related to the collection and sale of physician prescribing data by data solution companies.

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QuintilesIMS is a data solution company that provides services to the pharmaceutical industry. In 2002, the company was authorized by the Commission d’accès à l’information du Québec to receive and make use of personal information held by Québec pharmacies about physician prescribing practices, provided that: 1) specific professional acts were not linked to specific professionals; 2) physicians could refuse to have their information used; and 3) use of the information was restricted to reaching out, informing and training physicians. Data related to physician prescribing practices is sold by Québec pharmacies to QuintilesIMS. In turn, QuintilesIMS collects, collates this data and sells it to pharmaceutical companies for marketing purposes.

Recently, information related to QuintilesIMS business practices were leaked to the media.

Allegations have been made suggesting that data detailing the prescribing practices of 7,000 Québec physicians (including identifying information) have been disclosed to pharmaceutical companies. If proven true, this would represent an unauthorized practice, that contravenes the Act respecting the protection of personal information in the private sector. The issue at stake in the allegations is not the disclosure to companies, but rather, the disclosure of identifying information.

Physician prescribing data must be clustered in groups of 30 that have similar prescribing profiles. Thus, it is impossible in Canada (contrary to the US) to have access to individual physician prescribing profiles. In Québec, physicians can opt out of this data collection, and those who allow their information to be used, freely have access to their own prescribing profile.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

In the Journals – May 2017 by Livia Garofalo

Please enjoy the article round-up for the month of May! This post was put together in collaboration with Ann Marie Thornburg.

American Ethnologist

Plant matters: Buddhist medicine and economies of attention in postsocialist Siberia

Tatiana Chudakova

Buddhist medicine (sowa rigpa) in Siberia frames the natural world as overflowing with therapeutic potencies: “There is nothing in the world that isn’t a medicine,” goes a common refrain. An exploration of sowa rigpa practitioners’ committed relations with the plants they make into medicines challenges human-centric notions of efficacy in anthropological discussions of healing. Their work of making things medicinal—or pharmacopoiesis—centers on plants’ vital materialities and requires attention to the entanglements among vegetal and human communities and bodies. Potency is thus not the fixed property of substances in a closed therapeutic encounter but the result of a socially and ecologically distributed practice of guided transformations, a practice that is managed through the attentive labor of multiple actors, human and otherwise. In Siberia, pharmacopoiesis makes explicit the layered relations among postsocialist deindustrialization, Buddhist cosmologies, ailing human bodies, and botanical life.

Annals of Anthropological Practice

Special Issue: Continuity and Change in the Applied Anthropology of Risk, Hazards, and Disasters

Disaster vulnerability in anthropological perspective 

A.J. Faas

In the study of disasters, the concept of vulnerability has been primarily employed as a cumulative indicator of the unequal distributions of certain populations in proximity to environmental and technological hazards and an individual or group ability to “anticipate, cope with, resist and recover” from disaster (Wisner et al. 2004). This concept has influenced disaster research as a means to question how natural, temporary, and random disasters are and focused analysis on the human-environmental processes that produce disasters and subject some populations more than others to risk and hazards.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Analytics and the Prevention of Suicide

Greg Horne describes how data on social media can be used to identify and concentrate resources on groups who are at risk of suicide.

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Suicide is the second leading cause of death among youth in Canada. According to Statistics Canada, in 2011, it accounted for approximately 20% of the deaths of people under the age of 25. The Canadian Mental Health Association claims that among 15 – 24-year-olds the percentage of deaths caused by suicide is even higher, a frightening 24%– the third highest in the industrialized world. Recent reports also suggest that the suicide rates for First Nations and Inuit youth in Canada are from five to eleven times higher than the National average. Yet, despite these disturbing statistics, it is difficult, if not impossible, for health care providers (or friends and family) to identify whether a young person plans to injure themselves or die by suicide.

The warning signs leading up to a suicide can be easy to miss. For example, consider the recent spate of suicides at the University of Guelph. Was there a possibility of identifying the warning signs of increasing mental health issues at the University? Were there indications of a potential spike in suicides?

Some warning signs may be found online. Many people use social platforms like Facebook and Twitter to post detailed personal information about their health and their mental wellbeing. This information could help to identify groups who are at risk of self-harm or suicide.

SAS Canada, a data management, software development, and analytics company, is using a new artificial intelligence software solution to identify social groups that are at increased risk of suicide.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

User Beware: Privacy Settings just a Facade

Image via

By Brenda Curtis, Ph.D.

Social media platforms continue to improve and refine their privacy settings as the demand for advanced user protections increases. Although enabling catered privacy settings to online profiles allows users to indicate who they would like share personal information with, it does not necessarily protect them from the platforms – i.e. websites and apps – themselves. Since social media accounts provide users with a sense of control over personal data, users assume that their information is safe. However, no matter what settings or privacy protections are applied to personal profiles, users do not generally have control over the online platform itself. What this means is the website or app being used usually shares information from accounts with third parties like advertising agencies or other databases. This data sharing is widespread throughout the industry, but it is not generally known by the public. This is partly because the disclosure of this sharing is done in the social media platform’s “Terms and Conditions” Which are often skimmed over or ignored.

Aside from social media websites, there are several other websites and apps that access your personal information via this information sharing to create a single database for everyone in the country. This is generally called data aggregation. One such site that has been in the news recently is FamilyTreeNow.  FamilyTreeNow is explicitly a genealogy site, and compiles information from various legal online sources to create a database full of personal information for genealogical research. This site pairs information from public records such as police records and court documents with the information collected from social media and address databases to create a sometimes way too revealing profile.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.